equality and health inequality issues in dementia

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Equality and health inequality issues and dementia Jo Moriarty King’s College London Social Care Workforce Research Unit

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Equality and health inequality issues and dementia

Jo Moriarty

King’s College London

Social Care Workforce Research Unit

PHE Annual Conference 2

‘By 2015 every person with dementia will be able to say’

‘I get the treatment and support which are best for my dementia and my life’

‘I know what I can do to help myself and who else can help me. My community is working to help me to live well with dementia’

‘I wanted to take part in research and was able to do so’

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‘Dementia does not discriminate’

Dementia affects all of us

But we experience dementia as individuals: Our age, gender and so on

Our life experiences

Our personality

Challenge is to develop support that recognises BOTH these aspects

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Equality Act 2010: A framework for looking at inequalities in dementia

Rationalised existing legislation Some new provisions Nine ‘protected characteristics’

age

disability

gender reassignment

marriage and civil partnership*

pregnancy and maternity*

race

religion or belief

sex

sexual orientation16/09/14

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Age (1)

Risk of dementia increases with age

Social inequalities in health widen and converge at different ages

Gerontologists suggest health in old age is affected by inequalities across life course

Estimated number of people with dementia by

age

65-69 70-74 75-79 80-8485-89 90-94 95+

From Dementia UK report

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Age (2)

But increasing numbers diagnosed before age of 65 42,325 is latest estimate for

UK, includes people in 30s/40s

Difficulties getting a diagnosis

Increased stigma

May face different issues (e.g. employment, young children) http://

www.youngdementiauk.org16/09/14

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Disability

Office for National Statistics data shows variations by age, region, ethnicity, income

Only 17% of people have ‘just’ dementia (Banerjee, undated)

Extent of ‘diagnostic overshadowing’?

16-24

25-44

45-64

65-74

75 and over

0 10 20 30 40 50 60 70 80

ONS data on disability 2012

Longstanding illness or disabilityLimiting LSI

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Dementia and learning disability

Poor estimates of number of people with a learning disability, especially those aged 18 and over In 2010, estimated 58,897 of 191,469 learning

disabled adults aged 50+ (Emerson et al, 2010)

Large rises in numbers with dementia expected Better life expectancy

Higher prevalence of Alzheimer’s disease among people with Down’s syndrome

Reported incidence varies but as much as 25% in over 60s (Kozma, 2008)

Also higher risk of other health conditions16/09/14

Joseph Rowntree Foundation & University of Edinburgh DVD

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Gender

More women than men have dementia Some say mainly

attributable to different life expectancy

Others say different prevalence rates (e.g Roberts et al, 2012)

We need to include a gender dimension in service evaluations (Bamford, 2011)

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Image from Casual Fridays blog

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Sexual identity (1)

Only beginning to be addressed in dementia research Experiences of discrimination as

carers (Price, 2008)

Stonewall research with LGB people aged 55 and over (Guasp, 2011) 41 per cent of older LGB people

live alone compared to 28 per cent of heterosexual people

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Image from Alzheimer’s Society website

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Sexual identity (2)

Stonewall research also found that: Gay and bisexual men aged 55 and over much more likely to be single (40%

compared to 15% of heterosexual men)

Differences in relationship status between lesbian and bisexual women not statistically significant (30% compared to 26%)

Previous experiences of discrimination were a major barrier to using health and care services for LGB men and women

Uhrig (2013) found that: Higher proportions of older LGB people are living in poverty

Less than one per cent of those aged 65+ self-identify as gay or lesbian compared with 4% of those than those aged 16-24

US research shows effects of sexual identity on social support mixed

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But beginning to be addressed

Dementia Engagement and Empowerment Project (DEEP) has funded new project in Birmingham

ONS has been testing questions on sexual identity in Integrated Household Survey (2012)

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Gender identity

Gender and sexual identity are not the same ‘Binary’ gender distinctions do not reflect

many people’s perceptions of themselves We don’t routinely ask whether people self identify as

transgender/intersex/or other identity

We know there is a population of older people who transitioned in 1970s

We know there is a population of people who identify as transgender or who cross dress without having surgery or taking hormone treatments

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Marginalised

Differing views as to advantages/disadvantages of grouping with LGBTQ people

Research with transgender people suggests many people have had experience of discrimination which may influence ‘help seeking’ behaviour

Research with international sample of transgender adults aged 60 and over (McFadden et al, undated) found they were very concerned about developing dementia Concerned about intimate care

Concerned they will be treated in ways not congruent with gender identity

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Ethnicity

Series12013

205125000

50000

172000

Projected increase in numbers of BAME people with dementia (APPG, 2013)

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What we currently know

Emerging picture of different risk factors for different types of dementia

Present later to services when dementia is more severe (Mukadam et al, 2011)

Knowledge about dementia appears to be less (Seabrooke & Milne, 2009)

Stigma may be greater in some communities (LaFontaine, 2007)

Carers may experience particular difficulties (Bowes & Wilkinson, 2003)

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Image from 2009 Dementia Strategy

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Religion

In some instances may be more appropriate to look at ethno-religious groupings when examining social inequalities in health (Hills et al, 2010) But generally reported just in terms of ethnicity

Limited research looking at way religious beliefs influence help-seeking behaviour

Emerging evidence on how religious beliefs influence ideas about dementia (Regan et al, 2012, Regan, 2013)

Risks of stereotyping In 2001 Census, Chinese people were the ethnic group most likely to say

they had no religious affiliation 16/09/14

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Religion and ethnicity (2010 census)

Christian Sikh Muslim Jewish Hindu Buddhist Other No religion0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

White Mixed Asian Black Other

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Socio-economic status and intersectionality

Research in this area is mainly from the US Suggests there are risk factors related to

socio-economic status Education as a ‘protective’ factor?

Poorer physical and mental health throughout the life course?

Research often presented in terms of one characteristic but better to think of intersecting or overlapping characteristics

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Conclusions

Everyone has the right to the same opportunities to plan what support they want and have access to treatments that may delay progression of dementia

Social inequalities become increasingly important as we learn more about potential for risk-reduction in dementia

We have multiple identities so important not to look at just one aspect

Considering these factors is an essential step in delivering more person centred dementia care

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Acknowledgements and disclaimerThe Social Care Workforce Research Unit receives funding from the Department of Health Policy Research Programme. The views expressed here are those of the author and not the Department of Health

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